Wednesday, July 29, 2009

Okay - my kids are funny.They are a lot to keep up with -- but they are funny.

When they aren't fighting with each other, or whining about something ridiculous - they can really be quite endearing. Here are just a few of examples of the cute/funny things that they do.

Mary and Donkey: I am guessing that they got the idea for this game as we were talking about Christmas. We told them that Mary rode on the back of a donkey to Bethlehem. You will hear Paige ask, "Hey, Chawlie. Do you want to play Mary and Donkey?" Paige usually plays the part of Mary, and Charlie is usually the donkey. Paige sits on Charlie's back as he tries to crawl across the floor. I have no idea why this is fun.

Pirate and Princess: Charlie and Paige pretend the playgym is a ship, and the pirates are looking for treasure. The pirates also like to capture the princess. The only problem is, Paige wants to be a pirate - not a princess. Where is Cousin Eliza when you need her? She is always willing to be the princess :)

Play Cars While Watching Cars: He has always liked the movie, but suddenly Carshas become Charlie's latest fetish. Not only does he want to watch the movie all the time, but he wants to play with his Cars cars while he watches. He reinacts the movie with his cars. We have a little Cars playmat that has Radiator Springs and a racetrack on it. During the race scene, Charlie will line the cars up on the track -- in the order that they are in movie. Then he will crash all the cars and pretend that Lightning McQueen is springboarding off an overturned car. Then he will have Chick Hicks getting stuck in the pits. Ah -- it is really funny to watch him. My favorite part, though, is when he makes Mater drive backwards :) - And speaking of Mater driving backwards, it is not uncommon to see Charlie and Paige walking backwards and singing a little song they made up that goes something like this: " I know where I'm going. I can see where I've been."

Play Dress up with Babies: Okay - this really isn't odd - but it is cute. Paige has about four baby dolls that she likes to play with. She likes to undress them and then bring them to me to re-dress. This happens, oh, 20 times a day.

Campout: Another favorite. Charlie and Paige set up camp in their room. They get out their sleeping bags. They bring in their chairs from the playroom and set them up in front of the 'campfire' - a.k.a. the nightlight. They survive multiple bear attacks (Each stuffed bear has to attack, and then become a friend with whom they share food). Fun -- but messy game. Their room is a complete disaster after campout!

Dog Food Dash: This is Anna's latest game...I mean, annoying habit. First, she fusses until she gets to be on the floor. Then, when the coast is clear, she makes a beeline for the dog food. Seriously - what is it about babies and dog food? :)

Tuesday, July 28, 2009

The Northwest New Jersey Buddy Walk is Saturday, October 24, 2009. We plan to walk!

Last year, when we first signed up for the Buddy Walk, Anna was only 3 months old. We were still raw with emotion, and struggling to put Anna's diagnosis into perspective. I signed up so I could have a project - something positive to focus on, and to hopefully help take my mind off of the fear of Anna's future.

What I got was so much more. I hadn't even finished sending out my emails when my first donation rolled in . One of my good friends from college, Christie, didn't hesitate one minute to show her support for Anna and our family. It was so exciting to see such an automatic response - as if to say - 'Why didn't you ask sooner?'

Over the course of the next couple of weeks and months, the donations kept rolling in. And, our team was beginning to grow. I could only watch with amazement at the outpouring of love and support. I was humbled at the blessing that God was giving us.

The weather on the day of the walk was horrible. It was cold and pouring down rain. I questioned whether we should even be there with Anna since she had recently gotten out of the hospital with croup. But I am so glad that we went!

We had over 20 people from our team brave the elements to come walk with us. (I don't know how many people there were total) I met so many amazing people (parents, individuals w/ Ds, siblings, etc.) who gave me encouragement and hope. It was an all-around good time. And, God blessed us with a 30 minute window of no rain for us to walk!

When I went to bed that night - all I could think about how blessed we are to have Anna, and to have such supportive family and friends.

Over the past year, we have watched with amazement as Anna has progressed with her development; how she has worked hard in therapy; how she has struggled with a few health issues; but mostly, how she has blessed our lives and made our world a better place to live.

So, on Saturday, October 24, we will be walking in the Northwest New Jersey Buddy Walk to show our support for Anna, and the more than 350,000 individuals with Down syndrome in the United States. Every step we take, every dollar we raise, will help ensure that each individual with Down syndrome in the United States will be able to reach his or her full potential. Last year alone, over $9.5 million was raised nationwide for local and national education, research and advocacy programs.

Shortly, I will be sending out emails to friends and family, soliciting support. We are asking you to Buddy Walk with Anna to make a difference for people with Down syndrome in our community and help the National Down Syndrome Society create change nationwide. (If you are not someone I would regularly email, you can still give your support. There is a link below, and a link on the right-hand side of this blog)

The walk is less than a mile – so anyone can do it! Last year our team raised over $1200, and had over 20 people who walked on the Anna’s Banana Pants team. We expect to exceed both of those numbers this year!

Monday, July 27, 2009

Our local library has a summer reading program for children (as I am sure most libraries do). The kids keep track of how many hours they read, and they can win prizes. The summer reading program had an Under the Sea theme this year. Prizes included stuffed animals, beach balls, necklaces, and other various beach related toys.

When I explained this to Charlie - he was all about it. He took his little chart and a marker, and sat down with about 12 books. It was really cute to see him so excited about reading.

Paige was also excited. She can't read, but she sat and thumbed through book after book -- which the librarian told me counted for pre-readers.

We also have read at least one book each night before going to bed.

Anyway - Charlie and Paige both filled their charts and earned enough points to win some really cool prizes. But, what did they choose? A pinchy-shark which is certain to be taken away by the end of the day due to improper use and abuse, and a stuffed animal (like we need any more of those!). But, they are very excited about them - but more importantly - they earned them!

Last week was busy. Charlie has VBS each morning from 9-12:30. Anna had all three therapies last week, plus her 15-month check-up. And, we managed a play-date or two and a trip to the park. Oh, and don't forget the usual errands, shopping, cleaning, laundry, etc.

Anna did really well in therapy last week. She was much more cooperative with the PT - usually she screams the entire time. Not because it hurts her or anything -- it is just something that she does not want to do. But, during her DI and OT sessions, she was quite happy and was trying some new things. Hopefully this week will go as well :)

Charlie loved VBS! He is still singing the songs and dancing around. He came home each day and crashed - he was so exhausted. And by Wednesday he was asking if he had to get up early again. Yup- he is in for a rude awakening in September when school starts. We have full-day kindergarten here: 8:30-3.

Paige continues to crack us up and wear us out all at the same time. That girl, to quote the woman who watched her in nursery yesterday, " is a piece of work". And really, that about sums it up. :)

And finally, on Friday night, we enjoyed going to a local semi-pro baseball game with friends and family. It is one of those very small town baseball teams, but it is cheap, and very family friendly. Plus, they put on a pretty decent fireworks show after the game. :)

This week I will be busy packing and cleaning as we prep for vacation. We leave Friday night - woohoo! We are looking forward to it and praying for good weather! :)

Monday, July 20, 2009

Overall, it was a good appointment. She weighed in at 20lbs and was 30.25 in. long. For anyone keeping track...on the special Down syndrome growth charts, that is 80% in weight and off the charts in height (19% and 66% respectively on regular charts). Her head circumference is 43%, which I giggle at because all of my kids have small heads - even Paige, whom we always joke about having a big head.

Anyway, over the past 3 months, Anna has actually lost weight - or at least has not gained any. The doctor was not necessarily concerned, but did ask us to come in again in a month for a weight check. Her lack of weight gain can easily be attributed to a number of factors:

1) Anna is a lot more active, and is now army crawling all over place. In fact, I can't even set her down in the sitting position anymore. She locks her hips and back, and refuses to sit -- she wants to be prone on the ground so she can explore. :)

2) Anna's milk (and all liquids in general) consumption is way down. We switched from bottles to sippy and straw cups, so she doesn't drink as much. Also, she has been cutting her top four front teeth for what seems like forever now.

3) Anna is feeding herself now - well, mostly anyway. So, it is possible that she is not getting as much in her belly as it appears by what is missing from her plate. Just take a look in her chair when she is done and you can see she 'misfired' a number of times. :)

Anna's pedi. did encourage me to go ahead and get Anna's blood work done. Here in NJ they 'recommend' all children get a lead screen at 1 yr. I never did Charlie's or Paige's - I didn't see the point. But, the doctor thinks it is good idea to get Anna's blood work, not necessarily for lead levels, but for other baselines, such a platelet count, etc.

I did have a conversation with the pedi. about Anna's neurologist appointment, and the recommended 24-hr EEG. The doctor encouraged that the test was not a complete waste of time; however, she said that it wasn't urgent (in that, we don't think Anna is getting worse) so we could wait a month or two and reevaluate at that point.

And finally, I know some other people out in blogland were wondering about this as well, I asked about when to turn Anna's car seat around. For Anna, our pediatrician recommends leaving her rear-facing for "as long as she will stand it". Anna is just now 20 lbs, and is comparatively weaker than her peers. So, as long as Anna is not fussy about it, then keep her facing the back until she meets the manufacturer's weight guidelines (which I believe is 30 lbs for our specific seat).

So - we will let you know how the blood work turns out, and give an update on her weight gain next month.

This is Charlie's 3rd year of VBS, and he is very excited about this year. I am excited about a new CD of songs to listen to. Not that the last year's songs were bad - they were very good in fact, I am just ready for something new to listen to :)

The theme this year is Camp E.D.G.E. (Experience and Discover GOD Everywhere!)

Our church does a really awesome job at VBS. As of yesterday, there were 177 kids pre-registered, and I saw at least 20 kids in line for walk-up registration this morning. And, I have no idea how many volunteers from our church were there to work VBS -- from Jr. High kids to grandparents. It is really remarkable how God works.

Wednesday, July 15, 2009

Yesterday we took Anna to see the pediatric neurologist to find out the results of her EEG, and to see what she could tell us about Anna's Eye Rolling.

What we found out was, 1) her EEG was perfectly normal for a child her age, and 2) that doesn't tell us a whole lot because in order to give an accurate diagnosis they need to see what her brain activity is doing during one of these episodes. The neurologist also confirmed that children with Down syndrome do have a higher risk factor for neurological disorders, though not significantly higher.

I didn't have the video with me to show the doctor, but, based on my description, and attempt to reinact :), she said that it could possibly be Benign Paroxsymnal Tonic Upgaze (PTU). You can read a little about it here, or you can google it and find many medical journals on the condition.

In summary: Benign paroxysmal tonic upgaze is an ill-defined neuro-ophthalmological disorder with onset in infancy. It consists of sudden ocular movements with sustained upward deviation of the eyes. Episodes disappear with time: spontaneous remission occurs within a few months or years without any change in psychomotor development. EEG and neuro-imaging are unrevealing. To date, the pathogenesis of the condition is still unknown.

The good news about PTU is that it is considered harmless, and that children tend to outgrow the condition.

I also found many videos on youtube of children with PTU. Below is one that really reminds me of what Anna looks like...just a quick rolling of the eyes - and then back to normal.

So -- it could be nothing, as in, just one of those crazy things that babies do. It could be PTU. Or, it could be seizures. The only way to know for certain is to do more testing. Anna's neurologist has suggested that we do a 24-hour EEG, where we try to recreate the episode and capture it on both video and EEG.

Ugh! What a logistical nightmare trying to schedule such a test. And then, if she does not do the eye rolling thing during that 24-hrs, we would have to extend it.

Needless to say, we are debating whether we should bother with the test or not. As much as I want confirmation about what is going on, I also am not as concerned about it as I was a couple of weeks agon. We have Anna's 15-month check-up next week, so I will discuss the options with her pediatrician then.

Friday, July 10, 2009

We got our kids a new playgym. The old one was here when we moved in, and was, therefore, who knows how old. The wood was beginning to rot, and it was quickly becoming unsafe.

After much deliberation about whether to repair the old playgym, build a new one, or buy one (and then, which one to buy), we finally decided on the All-American Palace from Rainbow.

Charlie and Paige were so excited about their new playgym that we decided to have a 'Playgym Party'. We invited a couple of the neighbor kids over to play. Then we grilled hotdogs, ate watermelon, and enjoyed some frozen treats.

Carissa, our photographer for The Littlest Heroes Project, is such a sweetie!She resized all the pictures for me so I could upload them to my blog and Facebook.Anyway - here they are...Enjoy! - but be careful not to get lost in Anna's eyes!

Tuesday, July 7, 2009

First, you have to deprive your child of sleep the night before. In order to get the most accurate reading, they like for you child to sleep during the test. And, in order to facilitate the sleeping, they ask that you allow your child to sleep no more than 3 hours the night before. Which, of course, means that you, also, will be getting no more than 3 hours of sleep the night before.

Anna was such the trooper being kept up late. I have never seen such a happy sleep-deprived baby in my life! She was all smiles until about 10:30. Then she just got quiet - no crying, though.

I got her up early on Monday morning, and we went for a sunrise stroll. Still no crying or fussing.

In fact, she didn't do any crying until the tech started to put the leads on her head. They had to put 32 leads on her itty-tiny head.

They wrapped her head in gauze so she would not rip them off. Then, they dimmed the lights, and Anna went promptly to sleep in my arms. (Such a sweetheart!)

When the test was all over, we removed the gauze and leads from Anna's head, and she was left with a wild-n-wacky hairdo!

We will find out results next week at our neurologist appointment, but the preliminary prognosis is 100% normal. (At least that is what we are praying for!)

Sunday, July 5, 2009

Our photographer, Carissa, was awesome! I have no idea what the pictures look like, but it really doesn't matter because Carissa was so sweet and such a joy to work with. I am sure she did a great job, though. Check out her website and see her work.

Anyway - for all of you out in blogland who have not taken advantage of this incredibly kind and generous offer....check out The Littlest Heroes Project and celebrate your special child!

Thursday, July 2, 2009

Anna had a follow-up with her pediatric ophthalmologist today. Her surgery was just under three weeks ago, and we went back to the doctor today to see how well the surgery worked.

The news is that the left eye looks good -- all clear. The right eye is still a little clogged. It still gets a little crusty in the corner and tears occassionaly.

The doctor prescribed some more drops for her eyes, to hopefully flush things on out. Also, she is getting her four front teeth, so we are hoping that has something to do with the additional tearing and drainage.

We see the doctor again in September. Praying that we get the 'all clear' at that appointment!

Wednesday, July 1, 2009

Ugh...it has been one of those days today. And, unfortunately, I have had a lot of them lately.

Today Charlie and Paige just about sent me over the roof (and it is only lunchtime). It was all I could do to control myself and not let loose on a yelling tirade like I really felt like doing. I am getting frustrated with them not getting along and/or not doing what I ask them to do.

Paige is in a world of her own most of the time. I tell her do something as simple as, 'Go get your pink flip-flops on', and when I come downstairs, she is playing with toys, still with no shoes on. I seriously have no idea what to do to motivate that girl to do what I ask when I ask her to do it. Taking away toys/privileges/etc. doesn't work. She laughs at punishment. She is not motivated by rewards or sticker charts. Basically, if it is not on her agenda - good luck getting it done without a fight.

Charlie is quickly becoming that aggravating older sibling. You know - the one that gives you the sneaky punch when Mom isn't looking, and therefore, can't really get into trouble because there is no proof. And then, Mom is angry with the younger sibling for whining and crying. It is a vicious cycle.

Anna is the sweet and innocent one of the bunch, but she has not been without aggravation the past couple of days. She has her front teeth coming in and they are really causing her to be quite fussy -- which is very unusual for her.

Add to that the stress of my husband being out of town M-Th each week and new health concerns for Anna and I am just about at my boiling point.

And, I as I was thinking about all of this, and how frustrating my kids are being, I couldn't help but wonder how God must see us (me), and how frustrating we must be to him. We are his children and he has rules that he wants us to follow. Yet, we break those rules over and over again. God asks us to do things, and we continue to ignore him and do what we please. God gives us so many blessings that we do not deserve, yet we continue to complain and be envious of others. And, despite all of our disobedience and childish behavior, God loves us unconditionally and continues to forgive us each time we sin.

So, I sit here, humbled by God's grace and love for us. Surely, I can muster up a little mercy and love for my own children, too. (Shouldn't be too hard -- they are darn stinkin' cute!) -- Just let them take a good nap first!

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Anna Banana Pants

Anna Banana Pants is our third child who has a little something extra...an extra 21st chromosome. Having a child with Down syndrome is not the life sentence that many believe it to be. In fact, it is the probably the greatest blessing we have received as a family. This blog is about Anna, and our everyday family life.